I was kicked off “my parkinson team” website for referencing Dr. Constantini’s Thiamine therapy.

[Cons10s]

My posts were deleted and my profile removed permanently. They claimed I was acting promotional when referencing Dr. Constantini therapy and my results. Myparkinsonteam.com seems to be serving their agenda not their members.

[Hidden]

What kind of "team spirit" is that?

Well at least you now know what they're about!

That also means that we won't have to worry about Dr. Costantini having to answer more of the same questions on that forum!

Art

[Gioc in reply to Hidden]

Art, I would like to thank you publicly for the great help you are giving here on HU, with your expert advice that I follow and for much help in dissemination.

A person like you makes the difference wherever he is and we are proud and happy to have you here with us.

In four months on HU I learned from you and the others a lot of useful things from which I get great benefits.

The strength of a forum is given by the people who attend it, and we on HU are the best group.

We HU people listen to everyone, we are very critical but we do not close the door to anyone, our goal is to help and we love each other. We are honored by your presence here. Thanks for all the help you give! Gio

[Don_oregon_duck in reply to Gioc]

GioCas says my feelings exactly. This community spreads the light of hope, for those who want to keep an open mind about opportunities. I am seeing, first hand, the difference between truth and fake news. We must be aware enough to discern who is making the fake news statement, those opposed to Dr. Constantini's treatment will define fake news a little differently.

Is it too early to nominate Dr. Constantini for the Nobel Prize in Health? If he was, he would be the first, as there is no category for that prize, yet!

[AmyLindy in reply to Gioc]

Ditto- thx Art. Pls never stop!

[AmyLindy in reply to Gioc]

@Art has helped so many of us and we echo your gratitude, GioCas!

[Cons10s in reply to Hidden]

Funny ‘team spirit’ that gave me a good laugh.

Constance

[Gioc]

The priests of the temple are busy to maintain the monopoly on the quest, this has never worked well, is true Art?

[Hidden in reply to Gioc]

Yes, Gio, it is too bad when better health care is based on what you can afford!

Art

[park_bear]

So sorry you were subjected to that kind of treatment, Cons10s. Indeed at least we know what they are about. Many people do not realize that the $5 billion big Pharma advertising budget pays for a lot of anti-supplement propaganda published in medical journals and other places. Doctors are propagandized to believe supplements can do no good and prescription meds can do no harm.

From the My Parkinson team website:

" We are an independent, venture-capital backed startup... MyHealthTeams has become the fastest growing and most engaging set of social networks for web and mobile apps in healthcare.

...

On occasion, we will partner with a pharmaceutical company "

[Cons10s in reply to park_bear]

There it is plain as day.

Thanks for being such great support.

Constance

[ddmagee1]

Take it with a grain of salt. Move on from that experience and don't dwell on it. You will get support from this forum. It's not worth thinking " would of, could of, or should of ".

[Cons10s in reply to ddmagee1]

Moving on, but I feel bad about several people who were truly interested in learning more about therapy perhaps they will find this site.

By the way my Parkinson’s team is located in downtown San Francisco’s high rent district. They are clearly well funded.

Constance

[Gioc in reply to Cons10s]

good news that perhaps in Italy we have a government of political groups that does not respond to big pharmas and has already shown some interest in alternative treatments. Let's hope

[park_bear in reply to Gioc]

There is much good medical research that goes on in Italy. Thiamine is not the only such case.

[Hidden in reply to Cons10s]

That is among some of the most expensive real estate in the States. That must be a very nice budget they are working with! Just a parking space in that area is astronomical, cost wise!

Art

[bassofspades]

I have found the general mentality of myParkinsonTeam to be more of a "wah-wah woe is me" misery fest with very little helpful things exchanged. Health Unlocked is more about teamwork and putting our heads together for a solution to our problems. I stopped subscribing to that site long ago.

[ddmagee1 in reply to bassofspades]

Thank you bassofspades! I feel the same way.

[bassofspades in reply to ddmagee1]

(F--k) those whiners!

[pjokeefe in reply to bassofspades]

I concur. I joined MPT but stopped reading their posts as I found them unhelpful and depressing. So happy I found this forum. I love the discussions on health unlocked, the continual searching for knowledge. Thank you to everyone, I have learnt so much. Now trying thiamine myself, 600mg a day, and find I have so much energy, less rigidity and my tremors are reduced especially under stress. Azilect is my only PD med.

[ddmagee1 in reply to pjokeefe]

Glad to hear of your improvement!

[Gioc in reply to pjokeefe]

Write to Costantini he will be happy to know that you have success with the use of thiamina and will be happy to follow you personally. He will give you the certainty on how to follow its protocol even if it is simple.

[pjokeefe in reply to Gioc]

Thank you, I will. I am so surprised at how thiamine is working, just slowly working up to a higher dose, but I can see that it is time to contact Dr Constantini for reassurance that I am on the right track. I am fairly sure that it is not just placebo effect as I can walk for miles without tiring and where I live (Berwick, Melbourne, Australia) it is very hilly. I am also starting to smell things I haven't smelt for years. Also thank you Giocas for your wonderful encouragement, you are an inspiration.

[Jogger20June in reply to bassofspades]

the last thing we PD people need is misery or pity..I say let's move (walk, work in the garden etc) and simulate your mind (music, games, work) but dont over do it

[olehoss]

Constance, wondered where you went after searching the entire MPT Site for your posts, trying through @Jaybird, and others. Reason for my search is due to a post about the use of B-1, in heavy doses, for Parky. Interesting info.

Now you've been found - and the reason for your "demise", will let some others know of your where-a-bouts; if that's okay?.....Glen aka olehoss

[olehoss]

Constance, hope this Site is easier to negotiate than MPT! .....Glen

[jaybird53]

Constance, Glad I found you here. Nothing like a familiar “face” in a new environment. Thinking of substituting Thiamine for the amino acids protocol if that’s possible? Doing ok w it but getting tired of the inconvenience and volume. Do you know if they’re substitutable ? Thanks

[lempa_nik in reply to jaybird53]

Two months later, jaybird53, you finally got some answers:

healthunlocked.com/parkinso...

[Cons10s in reply to jaybird53]

Nice to see you here Jaybird. I've been travelling so just now catching up. I've learned tons during the past few months on this website from the fantastic member support. I'm sure you've found it to be a positive wealth of information.

To answer your question about Thiamine and Mucuna, I use both as they both provide individual benefits. I'm hoping to post an update of my Thiamine progress "on the designated thread" soon as it's really been remarkable. I have emailed Dr. Constantini about using Mucuna, and he responded with "I have no experience with Mucuna" therefore he won't comment. However he does encourage using Sentiment with Thiamine, so i surmise it can't be much different.

I got in trouble on MPT for posting Dr. Constantini, Solgar and that it could be purchased on Amazon. I was accused of promotion.

FYI: JJ on MPT is a friend of mine...We're back!

[jaybird53 in reply to Cons10s]

Thanks Amy. I’ve emailed Dr Costantini also about transitioning from Mucuna etc to Thiamine tx. Sounds like that not a recommended pathway ,from what I’ve heard here. Hate to give up on my hope to simplify or reduce my volume of supplements. There’s a question of using B6 and B1 concurrently and Hinz and Costantini both use large doses of different B vitamins ? I hope to hear back for clarification? Good to see your doing well!

[AmyLindy]

Wow!

[JANVAN]

Interesting......here a link, a bit another topic, but I can't post my post.....

cell.com/cell-reports/pdf/S...